Dalia Project: new support for Friedreich’s Ataxia research

There are diagnoses that arrive after years of questions, small signs, and answers that seem to never come. This is exactly what happened to a girl of just 15 years old in Pistoia, who had been living for some time with motor difficulties and balance problems, initially linked to scoliosis and other possible causes.

Only after numerous neurological visits and tests did the name of the disease emerge: Friedreich’s Ataxia, a rare hereditary neurodegenerative condition that affects the nervous system and progressively impairs balance, coordination, and movement.

We met her parents who, during a long conversation, told us what it means to live with a rare disease and how, after the initial confusion, it was important to seek information, understand how research is moving, and find a concrete way to contribute.

“After the diagnosis, we started contacting specialized centers and informing ourselves more and more,” they recount. “We realized how much research into rare diseases needs the support of families and associations.” That is how Progetto Dalia was born, created to raise awareness about Friedreich’s Ataxia and support scientific research. Among the association’s goals is also the support of research at our “Centro Dino Ferrari” of the University of Milan – Policlinico Hospital, which studies new therapeutic strategies for Friedreich’s Ataxia, including through the use of gold nanoparticles. An innovative project carried out by Prof. Yvan Torrente and his team.

Today, this family is learning to live with new limitations and a daily life that has changed compared to a few years ago. Yet, they continue to look to the future with extraordinary fortitude and determination, traits that unite and characterize all the people born around this new reality.

Alongside Progetto Dalia, a network of people ready to contribute with ideas, time, and solidarity initiatives is already being created. The first event will be on May 23rd, from 6:30 PM to 8:30 PM, at the Moon Gallery in Pistoia, where the official presentation of the association will be held. It is an event open to everyone to get to know their story more closely and join forces in support of scientific research on rare diseases.